Monday, April 7, 2014

A look at the Upsee mobility device for kids—and your chance to win one

When I was little, I'd stand on top of my dad's feet and he'd walk around, just for fun. When Max was little, I'd stand him on top of my feet and walk him around to show him how walking felt. I so wanted him to feel the movement and the motivation. I wanted to do everything within my powers to help him get around.

Mom Debby Elnatan, who's from Israel, felt the same. She had a two-year-old with cerebral palsy, Rotem. A therapist once told her that her child had "no consciousness of his legs." But Debby was determined to get him moving. She also wanted to save her back, which was in pain from guiding him around while she was hunched over or on her knees. She sewed a harness for Rotem that she attached to her body, put him in sturdy sandals that she strapped to her own and started walking around with him. Eventually, they'd cruise their neighborhood leg-in-leg for two hours at a time.

That's how the Upsee came to be. Debby eventually brought a prototype to Leckey, a company based in Lisburn, Ireland that makes positioning equipment for children with special needs. Leckey has a new division called Firefly that focuses on special needs family participation, through which the Upsee is being sold worldwide starting today.

Firefly invited me to the launch of the Upsee at the Leckey factory. That's where I met two-year-old twins Danielle and Charlotte (she has cerebral palsy) and their parents Julie and Cameron Taylor. I watched as Charlotte's entire face lit up when her dad strapped her into the Upsee. "She calls it the 'up,'" her mom told me. "She gets so excited every time she's in it, she doesn't want to come out!"

As you can see, the Upsee is comprised of a hip-belt that wraps around an adult's waist, a child harness that connects to it (it resembles a baby carrier), plus strapped rubber sandals. It's geared toward kids with a maximum weight of 55 pounds; a child's shoulders should be below the adult's belly button. I felt downright awed as I watched Cameron and Charlotte stroll around:

As I watched kids using the Upsee, I kept wishing I'd had one when Max was little.

Left, Claire Smyth and Daniel, 5, who has global developmental delays; Louise Watson and Bethany, 3, who can't walk because of a rare genetic mutation

Debby Elnatan watches Bethany enjoying her invention

So far, the Upsee has been tested by 22 parents and kids in the U.K., U.S., Canada and Israel; it's been in development by Leckey since 2012. The company had a physical therapist and occupational therapist overseeing the parent trials, and hopes to do formal research in the future. All the parents I met on the trip had great experiences with the Upsee, including the wonderful Kara Melissa Sharp of Free as Trees and Stacey Warden of Noah's Miracle, both moms to boys with cerebral palsy.

The Upsee takes some getting used to for parent and child but soon enough, parents say, you get into a rhythm. As Kara wrote over at Bloom about trying the Upsee with Sebastian in their home, "We walked through places that his walker doesn't fit. He saw things from a different perspective. We counted steps and he got excited, picking up the pace a bit. When he tired, we stopped and stood together for a break. As we did so his younger sister came toddling up to him, threw her arms around him and gave him a big bear hug.... She can't hug him when he's in his walker."

The Upsee is $489, including shipping, in the U.S. and Canada. That's 269 UK pounds, and 329 Euros. It comes in four harness sizes (check the sizing guides on Firefly for details).

Some parents who tested the Upsee have noted improvements in weight bearing and step initiation with their kids. It's important to know that this device is not meant to teach kids to independently stand or walk. It's also not a replacement for physical therapy or walkers—it's a mobility tool, and another way for kids to have fun with their families. As Firefly Clinical Research Manager and occupational therapist Clare Canale says, "Ultimately, this is about quality of life and we hope that the Upsee will enhance the lives of children with motor impairment and their families."

• The Upsee is not for children with severe high tone; severe asymmetry; severe lower limb contractions; a history of lower-limb fractures; and an unstable medical condition requiring fast repositioning for treatment.

• The Upsee should not be used by pregnant moms or parents with a history of lower back pain.

• Child siblings can't use this—it's for adults only.

• It is not advisable to use the Upsee on stairs.

• If a child wears splints or braces for weight-bearing activities, he should still wear them in the Upsee.

If you're thinking of getting an Upsee, discuss it with your child's physical therapist.

UPSEE GIVEAWAY

Firefly is generously donating one Upsee to a reader, shipping included. Enter via the Rafflecopter form below, privately leaving your email. You can gain additional entries by leaving a comment, tweeting or posting on Facebook.

The giveaway will be open for three weeks, until April 28, 2014 at 12:00am EST.

Within two business days after the giveaway closes, I will choose a winner and contact the winner. If I do not hear back from the winner within five business days, a new one will be chosen. Once the winner is verified, I will announce it here.

The UpSee will be delivered approximately 12 weeks later. For complete entry terms, see the Rafflecopter form.

Disclosure: Firefly paid for my airfare and accommodations but the opinions expressed here are my own. As with any use of a device for your child, consult a medical professional or professional therapist if you have questions. By entering this giveaway you release the owner/writer of Love That Max from any and all liability for injury or damages that may result from your use of the Firefly Upsee. For any questions about the product, contact enquiries@fireflyfriends.com

My daughter has spastic quad CP and its more mild in her hands than her legs. After reading all of the different people that have tried this out and reading this article I am more than confident that I would love my daughter to have one of these. Searching for the funds to make this happen. Good luck to everybody :)

Hi Gary, My husband and myself both use the Upsee with our son Sebastian. He even walked over rocks at the Giants Causeway! The way the harness and waist belt fit allows for flexibility and movement; tripping over our son is not a concern. It is also important to wait for his walking cues so that we can work together walking. I think the hardest part is being patient because we are so excited to walk together. It is also helpful for us to have two people to put it on. We aren't running around in the Upsee, but slowly walking around and exploring. It's possible to kick a ball, or walk hand in hand with a sibling, but as long as the device is worn properly and according to the guidelines, safety should not be a concern. Our hands are also hands free, allowing freedom for any additional support that may be needed.

Hi Gary, I did not see this comment before I made mine further done. It looks extremely dangerous to me as well and has me a little concerned. I am sure all parents would be careful but it clearly would make tripping for the parent more likely . . . and the child would be where you would land . . . as exciting as it is to see a new product for disabled children, it would be horrific to have an injury.

I just noticed that this is made by the same company that made my son's bath chair - Lackey. Since his bath chair is such a well made, helpful piece of equipment - this makes me want an upsee for him even more.

what an incredible gift the upsee is to the entire special needs community! I would love to see how my Sammy would thrive using the Upsee, and what it would be like for her siblings as she's up and around them playing! Great for the entire family.

I am soon to be a proud grand mother of my 13th grandchild who will be adopted from China. He is three, has lower limb issues, some atrophy and cannot walk. I can't wait to see awesome "invention" in person and close up.

I would love an Upsee for my four year old son. He LOVES to dance! We love taking our dogs for walks on trails and now that our son is bigger and too heavy to carry or wear, we really want to try it in an Upsee! We were so excited to see it and wish we'd had it when he was younger! He'd be able to be out in the backyard with us raking! He loves all of these rings. None of which he's been able to do :(

Wow! Amazing that you are able to provide so much information about a great tool that we have been drooling over for a few weeks. My daughter Dylan needs to work on carrying her weight and stability and I would love to see how she would with one! Thank you!

I love the idea of the closeness of being with my daughter, working together...often so many other people help her, that I love the idea that this is something we, either myself or my husband, can do with her.

I would love to win this for my niece's son, Zach. He was recently diagnosed (last week) with Pontocerebellar Hypoplasia Type 1 and is now in a wheelchair. I'm sure it's especially hard for him as he was once running and playing with his siblings - less than two months ago. I'd love to win this for him.

Count me in as someone who would love to try this with my daughter. Although she's nearly two,we still use her infant front carrier to carry her around, but she's soon going to be too heavy for it. Good luck to everyone!

I have been watching videos and reading about the Upsee for weeks now! We would LOVE to win one! I have two kids with special needs (7yr old son and soon-to-be 4yr old daughter) neither of whom can walk without assistance. Between the two of them we would get so much use out of the Upsee!

I would love to win this for my daughter. She has a rare brain malformation and misses out on a lot of socialization opportunities because of her disabilities. She has a cousin who was born 18 days after her and I would love to have this to allow them to play together in a way that they haven't before. I do a monthly photoshoot with the girls and this would open up more opportunities for those as well. You can check out our story on her facebook page: Emileigh's Bright Side of Life. Good luck to everybody, I know the winner will be over the moon about winning this awesome prize!

I would love this for my son! He was born at 24 weeks and suffered brain bleeds due to being born so early. I had seen this on Facebook and then his PT said she wanted it for him too. Such a brilliant invention!

So generous of you! Upsee is a product that is going to transform children/families in so many ways. I can't wait to start seeing more posts and pictures of all the wonderful experiences that will happen.

My daughter has hemiplegia cerebral palsy and is legally blind..she's insecure when it comes to standing although she has the muscles to do so. The Upsee would be perfect to show her the movements and feel secure next to me! Such an amazing invention!

This is awesome!! This gives me chills because it would be awesome for our 2 year (especially for our park visits!!). Our daughter has Spina Bifida and is wheelchair bound. God has blessed us with being her parents and we want to give her the best life possible. Thank you for sharing your talents and letting God inspire you with this great idea for our little ones!

I would dearly love to have an Upsee for my grandson Tyler he has truly been the absolute completion to our little family, it would make his day to be able to be mobile to play with my granddaughter, and be able to feed the chickens with his Uncle and Grandpa. He has a gait trainer but living in the country he only gets to use it inside and there isn't much room for him to go. We would truly love to win an Upsee

Would love to have wrote my story above I would dearly love to have an Upsee for my grandson Tyler he has truly been the absolute completion to our little family, it would make his day to be able to be mobile to play with my granddaughter, and be able to feed the chickens with his Uncle and Grandpa. He has a gait trainer but living in the country he only gets to use it inside and there isn't much room for him to go. We would truly love to win an Upsee, however didn't get credit for it

This gives me goosebumps and butterflies. I think this is amazing! I am constantly trying to think of ways to give my son a different experience and I am very excited about the upsee. I would be more than grateful to win this. He has cp and he so constantly gets bored of all the different things we try with him. This would provide such a different experience for him. I can only imagine how he would feel. His dad already has been trying to walk around a little bit with his feet ontop of his. So impressed with the person who came up with this. Thank you so much!!

Siobhan BainHI I would love this for my son Fintan (he is nearly two and has an undiagnosed developmental delay, hypotonia and some other issues). He is really struggling with step initiation at the moment and I would love to try this to see if it would help him.

This upsee is amazing, my son is 2 and he has an undiagnosed neurological condition which involves global development delay amongst lots of other problems. This would be perfect for us as he hates just laying down or sitting in chairs he always wants to be standing and is always trying to step with his feet I'd love one for him to try

Entering for my nephew who has severe CP. Would be amazing if I won for them. My sister is one of the best moms I have ever known and even though she is my younger sister I look up to her in so many ways. She goes up and beyond for her little man and is his best advocate. My fantastic little nephew is such a fighter and really deserves this. He just went through surgery and this would be such a great recovery gift :)

We are in the process of adopting our 3 yr old SN's foster daughter. The Upsee would open up so many possibilities for her! She has severe global delays, significant CP(dystonia) and CVI. She came to us about a year ago with very little responsiveness. We've seen her just come alive as we strive to pour into her each day. The Upsee would be an incredible opportunity for her to blossom even more.

My 2yr old son, with spastic quad, loves to be standing and tries *really* hard to walk. We had him in a baby walker forever. I think he would love love love to be able to walk with everyone else. I can imagine him at the children's museum being able to get right up to the exhibit- much closer than he can with his wheelchair. He would be crazy happy!

I have a son with Athetoid CP that can not walk or sit unassisted. I have had this Upsee linked to me more times than I can count this last week. However, it looks dangerous to me. Was there any problems with the 21 people that trialed with it? What are the plans for larger testing/requirements before selling it that they had to meet? Not sure if these are things you asked or not :)

Hi Kristine, I saw your comment under mine so I wanted to see what your concerns were. We haven't had any problems, as I mentioned above, it really is for taking small steps and exploring, not running a marathon. I spent some time with the woman who invented it who has spent hours in her own device with her son when she was creating it. She explained how the harness and waist belt work in conjunction with each other. There are three locations where the child is attached to the adult: the feet, his hips to your hips (in a height adjustable strap) and his shoulders to your hips/waist belt (again, height adjustable). The belt is snug but flexible so the child's hips move and sway with each step as would happen with typical walking. I think it's important to try the Upsee with two adults present as putting the child into it can be challenging without an extra hand.

I would love to have this for my son, Bentley! He is 4 years old, and has such a strong upper body, but his legs are very weak. He gets very frustrated in his gait trainer. He loves to be "part of the boys," and I can see him playing soccer, baseball, and basketball using the Upsee with his dad and brother. I think he would be so much more motivated to use his legs if he had the help that this device can provide. Such an amazing invention!

My daughter is in a wheelchair and will never be able to walk on her own. I'm not even able to hold her up to stand because of low muscle tone and scoliosis. To be able to use an Upsee to help her walk would be a once in a lifetime experience for her, and for myself as well.

My daughter will be having bilateral hip surgery for hip dysplasia. This device would be amazing in encouraging her to get up and move around afterwards and also provide some key neurological stimulation to overcome some developmental delays. Thank you so much for this product and a chance to win one!

My son, Zac, is 8. He has Cerebral palsy and agenesis of the corpus callosum. He loves to be mobile, though he cant walk. the upsee would help him get the weight bearing and motions necessary to be able to get some more movement into his day!

Wow what great device. It would make such a big difference in my grandson's life. It would provide him with much needed support! It would also help my daughter in her persuit of mobility for and quality of life for him. Thank you for this opportunity

My babygirl Elara is almost 10 months old and she has a rare syndrome. So rare, the doctors dont know what it is yet. Because me and my fiance have been working hard, we came far already with her disabillities. When i heard about the Upsee i started crying, knowing that this will help her in the future. We have had rough months, never had a moment to sit back and relax. But we can't. We need to fight with her. If we have to wait for the insurance company to improve medical products, she wont be able to walk. So this mommy and daddy are fighting hard to provide the best future for her as we can. Love from Holland, Kimberley (www.ElaraBrandon.nl)

Ellen -- It's so funny because I was just reading through this piece, and you know we did a piece on BLOOM, and I suddenly realized that this was something that could have really benefited Ben -- he didn't walk till he was 2 1/2. For some reason I was associating it with kids with CP but not realizing it had wider applicability. Thanks!

My daughter is 3 and she is so curious and interested in the world. We try our hardest to help her see the world in any way possible...as she spends most of her independent time on her back on the floor, we love anything we can do to support her in upright positions. This seems like it would be such a fun way to help her explore and get the sense of walking!

This is awesome! I live and work at an orphanage in Haiti and oversee all of the therapy our kids with special needs gets. We have ten children with cerebral palsy and two with spina bifida and almost all of them would benefit from this.

My little guy is 2 and I believe he would benefit tremendously from this device! He has JS, causing hypotonia and ataxia. He currently has a gait trainer, and we've been trying a reverse walker in PT. Right now our biggest obstacle is getting him to consistently take steps... He likes to lock his knees. :)

My niece is 6 and she has Cerebral Palsy and a host of other challenges..winning this would be such a blessing for her and for our family.she deserves a chance to experience the world like her sisters do :)

I would love to be able to help my precious miracle grandson ~ TJ ~ for the first time ever ~ get to experince what is like to walk, and be able to go outside .. He has always loved watching trees blow in the wind and to be able to assist him to walk outside and not only see the trees up close moving in the wind ~ but to also feel the breeze ~~ Would be awesome ..

So excited about the Upsee! I've been watching the last few weeks as information has been shared. Our OT & I were both just discussing our mutual excitement over the release of such an innovative product. I remember doing similar things like putting his feet on mine to help our son walk, I just hoped that "feeling" what it was like to walk HAD to help and stimulate those muscles. We adopted a baby girl last year who has the same condition our son has and I am hopeful we can try an Upsee someday and have it benefit her. Her older brother is her biggest fan and therapy cheerleader!

I would love to win Upsee for my daughter with CP. We live in Malaysia and it would be great if we could use the Upsee not only for greater mobility for my daughter, but also to create more awareness about CP to the public.

Both of my daughters have special needs affecting mobility but are past the age where an upsee would be beneficial. I have a friend whose 3 year old has spina bifida but does not have the funding for the upsee and was apprehensive to ask for donations not knowing for sure if it would work out for them. I would love to be able to gift this to her, and when she is done, gift it to another child who could use it!

How amazing is this!!!! I would love nothing more than to be able to have a dance party with my happy little guy!! I can only imagine the look on his face when his whole body would move with the music and not just with mom carrying him :)

I have a son with cerebral palsy who doesn't understand his legs move. This would be an amazing tool to encourage him, and show him what could be in his future. But as a single mom 489$ is a bit pricey for us :/

I would love to win this product for my son. The thought of him being able to hunt for Easter Eggs with the other children, upright and out of a chair and not being carried as well as enjoying the beach as the waves crash up under him would be a dream come true!

I would love to give my daughter the opportunity to know what it is like to walk and to stand eye to eye with her twin brother. I would love to give her the chance to see the world as a typical 3 year old sees it, they way I saw it when I was her age, walking threw mud puddles, threw a warms summer rains, walk among the tall grasses and by the creeks not far from her home. I would love to give her the chance to interact with her world, close up, not from a seat.

our daughter has severe brain damage caused at birth, she can't do too much but we think the upsee would be great for her to bear some weight,because she can't seat or crawl or even roll over , plus she has CVI and being upright would be beneficial for her eyesight, right now she is 2 years and three months nut we would love to try the upsee for her to give her that experience of being upright.

My daughter is now 4.5 and had a traumatic birth that has resulted in cerebral palsy and other delays. She hates her stander and the walking device we have for her. I think she doesn't like the rigorous way she has to be strapped in to hold her upright. But, she does well walking when her therapist and I work together to hold her upright. She's so tall, two people are needed. One to hold her body and the other to move her feet. I think this device is a perfect idea for Myra! And I know her 4 older siblings would absolutely LOVE to be involved in helping her walk together with us as a family! Myra does everything our family does. We used to strap her in a sling to go places her wheelchair can't, but she's getting so much bigger that we cannot hold her weight for very long and no carriers are created to support her head when she's on our backs. This device would allow her to join us at all times and not be a strenuous weight on my husband or my shoulders. I'm so excited about this product!

My daughter, Sophie, turned 2 years old in February. She started having seizures at 5 & 1/2 months old. Over the course of the next 3 months, she lost the ability to perform everything that she had learned up to that point. She is currently nonambulatory & cannot sit up or stand without support; she has poor head & trunk control. She receives therapy services (PT, OT, ST). We work with her in a gait trainer and in a stander. I think this would be a wonderful device for us to us with her. She loves to be included in family things and I think this would help her be more involved. She could go outside & stand upright to play with her cousins. She could stand upright and walk around in the yard, seeing the dogs & horses at a different perspective. She would be able to explore our home in a way that she hasn't before. From the moment I saw this device, I was so excited. It would be great if we could win one for our sweet girl, to see what doors it could open for her with her development.

I am entering for a friend whose little girl would really benefit from using an Upsee. I think this is an amazing idea that helps to create an equal opportunity for kids with special needs. Thank you for sharing the love.

My son loves to be held and walked. He can only do it if someone is holding him so this would give him so much joy. He's 6 and can not walk but this would give him so much ability to be like the other kids.

My son Bryce is almost 5 and walks only holding hands with someone or with a walker but this limits him so much. He can't kick a ball or walk in grass and the Upsee would give him that special opportunity!Thanks!www.brycemoline.com

Having a child with a special need, spina bifida to be exact, allows us not only to better mobilize but also to enjoy the beauty of the life we live together. Our child will be in a wheelchair for the rest of their life and to have a moment to experience the value of using your legs for mobility is a gift we will cherish.

I'm the single mother of a toddler with a rare genetic neuromuscular disorder. He tries very hard to be active, but he's gradually losing the ability to walk. I know he wants to walk, and he's so determined, but he frequently gets hurt because he loses his balance and falls so often. I would love to be able to give this to my son so I can help him walk for as long as possible. I want to show him what it feels like to kick a soccer ball. I want to show him that there's more than his disability.

I would love to win this for my son. He has severe brain injury, cp, cvi, microchephly, seizures etc. I think it would give him much joy and strength. He is 9 now but only 42lbs. so he could still get much use. Such an exciting product. And it is so exciting that a mom developed it!!

My (almost) 2 year old would do great with this! I have been looking into other devices to get him walking and this one looks the best. Thank you for introducing it and giving us the chance to win one.

There are so many children that could benefit from this. I'm so excited to hear about the Firefly division of Leckey. This is exactly what parents want to see. My son is 2 with cdg type 1a. He loves standing, but I have a feeling standing with mom or dad would be way more exciting than standing in his Squiggles Stander. :-)

This is such a great product, so many kids who have difficulty walking or cannot walk will benefit from this product. I know my own daughter would benefit from this product. It amazes me the things parents think of that helps their child in anyway have a much richer and fuller life.

Wooooooo hooooooo I would LOVE to win this to use with my 4 year old daughter who has cerebral palsy!!! I'm sure like all the other parents in our situation, I have been keeping my eye on this product since I first saw the video for it several weeks ago. While I know it is worth every single penny, with all the other medical bills we have, I just can't justify spending nearly $500 right now on it unfortunately. If we won it, it would be AMAZING!! We would use it every day! And once she outgrew it, we'd donate it to someone else in need. Thanks for the opportunity!

This looks like a great product my granddaughter could really benefit from. Kloe is 2yrs old and has been diagnosed with Wiedemann-steiner syndrome. A VERY rare disorder. So far she is the only one in the United States. This disorder is still new to the Dr's here . They are really not sure the severity of this syndrome. We do know that this disorder affects the muscle and the brain. Kloes is slowly progressing. Just in Kloe time. One little step at a time

Thank you for the giveaway and for more info on the Upsee! I'd love to have one for my daughter, Claire. She has CP, CVI, epilepsy and cognitive delays. She loves to move and this would allow her to experience movement in a whole new, exciting way!

I would LOVE an Upsee for my son. He is 2 years old with a very rare chromosomal abnormality, and is working very hard on four-point crawling. His trunk control is very good, but he doesn't understand how to move his legs in an alternating fashion. His PT and I think that, once he grasps this concept, walking won't be far behind! He loves standing up but has a hard time holding on to things, so walkers/treadmills aren't working well for us. I think an Upsee could make all the difference in the world for him!

This product would be ideal for the littlest superhero I know. His PT believes this product would be effective in his treatment and would allow him to continue to defy all the limits others try to place on him.

I would love to win the Upsee for a dear friend who has two daughters both with cerebral palsy. She is a wonderful mother that takes time with them and does everything she can to help in their development. I know this product would help her two daughters climb to higher hopes. Thanks!

I LOVE the idea of this product for my sweet daughter. It would open up so many more opportunities for her to be involved in family activities. Going to the park, walking hand in hand with her brother and cousins, exploring more rugged areas of our country. LOVE IT!

My son Cole could benefit from this so much! He is 3 and has Spina Bifida. He gets around in his wheelchair, but he LOVES standing up! I found out about the Upsee a couple of weeks before sales began and have been telling all of my son's care providers (Drs., Nurses, Chiro, PT, OT, and teacher), and everyone else I know, about it! I am so excited that this product is now available and will change so many children's lives!

See, there's this boy who is already so amazing! He is my definition of a super hero and I can only imagine what this could add to his powers. He is two years old and I know that he will walk someday and I think this could put him on his way.

I am entering this in hopes of winning to give to my nephews wonderful little three year old daughter. Unfortunately her parents could never afford to buy this. Winning this for Audrey would change her life dramatically in such a good way, bless her little heart :)